God...it's exhausting...

Last night, for the first time in a very long time, I asked God why? Why does Darian have to live in her own personal hell?  Why did this happen to her? Why does my baby cry with such sadness and a lot of time anger and not be able to explain to me what's happening? WHY? WHY? WHY? It's truly aging me at a very rapid rate, I can feel my strength just leaving my body, my mind.  It's so exhausting and I know you parents out there who have a child like mine know exactly what I'm talking about.  I can't help but think about my future, her future, her progress, what are we going to do? What else can we do? We've done everything right, we have gone far and beyond to get her the help she needs, we have fought the fight with all our might and still, she has been wronged.  Imagine living with that on your shoulders.  It's exhausting! Then you have your other children who deserve your attention as much as Darian does and it's heart breaking.  I went to Madison's school for a parent-teacher conference and she regressed over the summer on her reading skills, although she's catching up, I am concerned with her speech and language services.  I cannot drop the ball on her progress.  This is crazy.  I never thought in a million years this would be my life and I have to believe it's with a purpose.  I know I've been trying to help other parents like me, other children like Darian, but it's very difficult.  These damn bumps in the road, people who have no clue what it's like to live like we do, who are so quick to deny a service because they think they know what your child's needs are.  It's so exhausting.  If I had a word to describe parents with children with a disability it wouldn't be saints, angels, good...it would definitely be EXHAUSTED.  You can definitely lose your mind.  Imagine sitting on your child's bed waiting for them to be ok with you leaving them for them to go to sleep, you of course would imagine this sweet smile, the peaceful look, the tired look and you kissing them good night and turning their light off and walking out.  Not me, imagine this, your child screaming at you, kicking you, biting themselves, crying with no end in sight and not knowing why.  You know they're tired, you know they've been fed, you know they should be very sleepy by now, but no, not our child, she cries like this for about an hour, while your other child is trying to patiently wait for you and what's worst is that you know in your heart your other child is growing to resent your needy child.  It's unbelievably sad to think it, but it's true.  So finally, you get to a point you calm her down, not with kisses because she will push you away (ouch), but with you maintaining your calm, even as the tears just come down your face and she sees this and looks at me confused and almost wants to laugh because she truly does not understand the concept of you having your heart broken over her disability and inability to communicate with you.  Finally she dismisses me by sayin "Mommy, go sleep too" and that was that.  All that drama and I still don't know why?  So I found myself asking God...why? I dare ask.  I just feel so helpless at times and although I have faith in God and in myself, it's the most difficult thing I've had to deal with in my life time.  I am a very strong person and you can throw anything at me and I will handle it.  But this is beyond anyone's capacity, it's incredibly difficult.  So I ask you my readers, my family, my friends, every time you see a parent struggling with their child, don't feel sorry for them, but please put yourself in their shoes and be kind to them.  And bless them and their huge hearts because it's truly exhausting.  So God, if you are listening, please, you don't have to tell me why, just give me more strength to deal with this and give me the peace I need within to be able to give peace to my children...God...it's exhausting...